YA-Focused Cancer Treatment and Survivorship: Why It Matters

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Young adults with cancer need different treatment than kids with cancer and older adults with cancer. We know this. You know this. Our friends and family members know this.

And yet, survival rates within this age group are not improving and have not improved in 25+ years. We need the power of medical institutions, researchers and providers to really put the spotlight on the unique issues that young adults face during and after cancer treatment. In large part, that’s why we’re so proud to be part of Critical Mass: The Young Adult Cancer Alliance.  That’s also why we are super excited to share this blog post with you.

In March 2012, the National Comprehensive Cancer Network® (NCCN®) released the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for AYA Oncology to raise awareness of the need to manage this population differently throughout the course of their disease.  NCCN is a nonprofit alliance of 21 cancer centers.

In January, 2013, the alliance released NCCN Guidelines for Patients®: Caring for AYA, representing the second of a critical and  comprehensive approach to bring much-needed attention to the unique needs of AYAs. With support from the NCCN Foundation® and the LIVESTRONG Foundation and through collaboration with Critical Mass: The Young Adult Cancer Alliance, the guidelines reassure young adults that they are not alone, prepare them for diagnosis and treatment processes, and offer advice on living life as a young adult survivor.

The SAMFund was honored to interview Peter F. Coccia, MD, of the UNMC Eppley Cancer Center at The Nebraska Medical Center, Chair of the NCCN Guidelines Panel for AYA Oncology and a member of the NCCN Board of Directors, about the collaboration and impact of releasing the professional and patient guidelines.

The SAMFund: NCCN has done an enormous amount of work to get these guidelines funded, published, and distributed to the medical profession and to patients. What do you hope for in terms of impact?

Coccia: There are unique psychosocial and economic issues specific to these age groups that require greater awareness. More than 70,000 new AYA patients are diagnosed yearly. Cancer is the leading disease-related cause of death in adolescents/young adults. Diagnosis and survival statistics have not changed significantly in decades. The need is urgent for more attention from the treatment and survivorship perspectives. The expectations for both the professional and patient guidelines are that they will contribute to optimizing care and improving outcomes in AYA patients with cancer.

The SAMFund: We support young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment. Cancer is expensive, even when active treatment is complete. As one of our recent grant recipients noted, “I did not have a rainy day fund for cancer.” Do the guidelines address the financial impact of cancer?

Coccia: Sadly, financial problems are all too common among AYAs with cancer. The guidelines reinforce the message that it’s ok to ask for help, before, during, and after treatment. NCCN put a great deal of work into creating “Part 10: Resources,” which includes nonprofit organizations like The SAMFund that provide direct financial assistance.

The SAMFund: Where can AYAs view the patient guidelines?

Coccia: Free access to the library of NCCN Guidelines for Patients® is available at NCCN.com. The clinical NCCN Guidelines® for specific cancers are available at NCCN.org.

The SAMFund: We’re suggesting that our community of alumni (past SAMFund grant recipients) share the patient guidelines whenever possible, as a way of paying it forward. How else can cancer support organizations help spread the word?

Coccia: By doing what you are doing. Share the guidelines as broadly as you can. It is also powerful for young adult survivors to share the information with the newly diagnosed. One of the most poignant comments I heard from an AYA survivor was, “I wish I had this information when I was in the thick of my cancer experience and when I could finally say I was cancer-free.”

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